Thursday, April 30, 2009

Measuring Improvement

I'm laying here listening to my ipod feeling grateful for things like beautiful music, a comfortable bed, my kitty, and my laptop which allows me to connect with others in the blogging world. Sometimes when I'm in a dark place I think of those of you whose blogs I read and who I feel a connection to and I feel a sense of comfort.

I'm still crashing. I woke up yesterday at 4 am. At 6:30 I took an Ativan to help me get back to sleep. It worked but it wasn't a good sleep.

I have to remind myself that, overall, I'm doing better than I was last year. The doctor who diagnosed me gave me such wise advice when he said you can't measure improvement in days or weeks but you have to measure it in months. If I think of it that way I don't feel as discouraged when I have setbacks like this week.

It's time to get my blood drawn again to make sure the Valcyte isn't doing measurable damage but there is no way I'll make it out of the house today. I don't have it in me to fight the dizziness in the car, the anxiety over whether or not I'll faint, etc...The dizziness is pretty much gone but I don't want to push it. I've noticed that while watching TV when the camera pans away I feel a slight sense of vertigo. Hopefully that won't increase. Sometimes I have to close my eyes. I don't watch too much tv anymore since I learned it can take a lot of brain energy to process the images.

This past Monday there was a meeting with the CDC regarding chronic fatigue syndrome. The CDC has been absolutely unethical in their dealings with this illness. They diverted money that was supposed to be used for CFS research into other projects. It's a long discouraging story that needs to be told. I don't know anything about the history but it can be found in Hillary Johnson's book "Osler's Web" and also in Dorothy Wall's "Encounters With the Invisible." Anyway, people with CFS were allowed to phone in during the meeting. Hillary Johnson provides a great summery in her blog: http://oslersweb.com/sb/page.php?ID=74147&post=594304

It's a crime what they are getting away with. I plan on becoming politically active regarding this illness once I finish with Valcyte treatment.

12 comments:

Measuring in terms of months (rather than days) is an excellent way of looking at it....one that I am going to adopt.

I get so discouraged over the days...some days I feel well and think I'm on the road to recovery and then I'm down for the count. On those days I think I'm not getting any better. But....when I stop and think back to a year ago or even 6 months...I do see some improvement.

Hi TerriI think it is great to look at it in terms of months...I think that is why i was so discouraged to feel worse than a year ago...the key will be how fast I recover I think...Small improvements just like small steps in expanding our energy envelopes....Bruce Campbell calls that the 1% Solution. I hope and pray your improvement and relief from your crash comes quickly....The CDC needs to be accountable for what they have NOT done for CFS sufferers...

Thanks for the link to the CDC conference summary. Terri, I left a long comment on your last post about my experience on Valcyte. I don't see it posted, but I hope you got it. If you didn't, leave a return comment and I'll try again.

Yeah, I think you've hit on a really important aspect of recovery. By the very nature of the illness it is going to be slow - and you know what they say, 'a watched pot never boils'.

I find some things get worse while others get better and I forget how bad I was. I had (have) an ME occupational therapist. She suggested I keep changes sheets on which I listed how I am now, physically, emotionally, socially and cognitively and where I want to be in six months. Then go back to the sheet in six months and complete it again. It's been helpful in noticing things like recovery time, or the time lag for PEM, or sensitivity to meds etc etc.

Valcyte sounds like pretty strong stuff. I hope you are back on your feet again soon.

I agree, too, with how to look at improvement. On the one hand, I'm still housebound, but on the other, when I compare now to the first years of this illness, I see vast improvement. The dizziness has been one of the hardest symptoms for me, lingering way longer than any of my CFDS friends. That's improved, too. It only worsens when I try to go into a big place with a lot of 'stuff', plus flickering fluorescent lights, or if I'm taking a med that affects me that way (as in most meds:-) I've read some of the accounts of the CDC meeting and I'm glad we had our 'day to say' even though I have no hope the CDC will ever be an ally in working with this illness.

I feel so blessed to be able to see such things....I would much rather be out enjoying them instead of just watching (I would have loved to go down on the rocks with my family but knew I'd never make it down and back up)...but hopefully...in time. I was just commenting to dh this morning...a year ago at this time I was in really rough shape...and hadn't even had a dx yet...so I have made a lot of progress (but get impatient with the day-to-day things)

Hi Terri,Here is a shorter version of what I posted on my experience with Valcyte. I took it for a year and, after an initial partial recovery at the six-month point, fell back to my pre-Valcyte level. When it became clear that it wasn't going to work, Dr. Montoya told me to stop taking it. Nobody seems to know why there are so many different reactions to the drug -- some are helped, some aren't, some experience partial improvement, some have the experience that I did.

It seems to me that five months is a good point for you to evaluate it as most people who are going to improve have experienced a noticeable improvement at the three month point.

I told myself when I started taking it that it was just experimental and not to have expectations, but once I was on it, I forgot that resolve and felt that not just myself but everyone I knew was counting on it to cure me. This change in my attitude toward it led to real heartbreak when it didn't work. So, try to remember that it was experimental and that you knew that when you started. It may help you cope should it not turn out to work for you.

Thanks for sharing your experience with Valcyte. I think you are right on about viewing this treatment as experimental and not to have expectations. It's hard not to. I'm trying to prepare myself for the inevitable.

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I first became ill in July of 2007. Or at least that's when I started having symptoms that I couldn’t explain away with being too busy, too stressed, not eating enough, not getting enough rest, etc.
In August I passed out while eating in a restaurant. In September I remember climbing some stairs while visiting a museum in SF and feeling a sense of profound fatigue. As I climbed the stairs I thought to myself "it's as if my cells aren't getting enough oxygen"and for a minute worried I might have some sort of leukemia. During lunch I literally had to put my head down to sleep.
By the end of December of 2007 I was housebound due to dizziness, fatigue, cognitive impairment and a myriad of other symptoms.
I'd completed my dissertation in 2006 and awarded my PhD in Jan 07. I'd always been active, athletic, driven.
Imagine my surprise when this all happened. It's been a life changer.
This illness is not for the faint of heart. 20% of people with cfids commit suicide. It's a fact. The illness is that devastating. I used to believe that cancer was the worst thing one could have. I no longer believe that.
Luckily I plan on getting as well as I can with the right help